Introduction

Definition of Kleine-Levin Syndrome (KLS) 

Kleine-Levin Syndrome (KLS) is a rare sleep disorder that includes recurrent episodes of excessive sleep (hypersomnia) and excessive food intake (hyperphagia).¹ It is commonly known as ‘Sleeping Beauty Syndrome’, and is associated with behavioural symptoms such as hypersexuality, apathy, and confusion when awake. This disorder primarily affects teenage males but can also affect others, regardless of age.^2,3 During an episode, someone with KLS can sleep for up to 20 hours a day. These episodes may last for days or even weeks.The time between episodes can vary; an individual with KLS may be able to carry out daily activities for weeks or months before another episode occurs.¹ 

Importance of understanding psychosocial impact

KLS has a significant psychosocial impact; patients do not simply ‘return to normal’. It is estimated that around 20% of individuals with KLS may develop a psychiatric disorder, including mood disorders.³ Since episodes are recurrent, it is impossible to predict when one may occur. Individuals affected may isolate themselves during an episode and struggle to return to their daily activities afterwards. KLS has a substantial impact on both daily functioning and quality of life.

This article will examine the impact of KLS on education, employment, and social relationships and assess its overall psychosocial implications.

Impact on education

Interrupted learning due to episodes

Due to the nature of the condition, students affected by KLS may struggle with maintaining academic achievements. This is because KLS episodes cannot be predicted and can affect an individual, depending on the severity of the condition. Patients who experience symptoms from the age of 12 or younger tend to have more frequent episodes, although they may last for a shorter period.³ The frequency of episodes will directly affect attendance at school, and therefore affect the ability to engage with learning and keep up with academic content. This affects performance in exams and, therefore, may have a lasting impact on key exams. 

A study conducted in the US compared the impact of absences in school to long-term achievements. It was found that students who missed more than 10 classes had a reduced test score in English Language or Maths by 3-4%.⁴ This shows a direct link between absence and academic achievement. Moreover, it was found that students with more absences were less likely to pursue higher or further education.⁵ As secondary school leavers, students with long-term health conditions or disabilities were less likely to be employed, in education, or in training.^5,6 

Cognitive impairments during and after episodes

Although it is often thought that individuals with KLS can carry on daily activities once an episode has passed, there are long-term repercussions. A study conducted on patients with KLS during asymptomatic periods found that patients with KLS exhibited reduced processing speed, attention deficits and cognitive ​​difficulties.⁷ This means that memory issues can affect students with KLS, causing a lack of concentration that directly impacts their ability to engage with school.

Emotional toll on students

The emotional toll on students with KLS, due to their inability to attend school alongside their peers, can be considerable. School is necessary for several reasons: education, preparation for the future, and, crucially, the social aspect. Being consistently absent from school could harm student engagement. Students with KLS may struggle to maintain friendships and, as a result, may experience social isolation. Moreover, missing out on the school experience may lead to frustration and low self-esteem.⁶ 

Educational accommodations

Since KLS has an impact on both academic achievement and the ability to enter the workforce, schools and organisations must provide individualised education plans. Allowing students to set and achieve personalised goals and make progress in their academic development. Furthermore, flexible deadlines may be needed due to symptoms associated with episodes. Students may struggle to complete work on time compared to their physically healthier peers; therefore, tailored online learning could also be an option.

Impact on employment and work life

Inconsistent attendance

The impact of living with KLS can be detrimental to individuals with KLS who were diagnosed at a later date. Although the onset of the condition occurs at an average age of 16, patients can be affected later in life. Patients who are affected at 35 years of age and older tend to have longer episodes.³ This means that employed individuals with KLS will have inconsistent attendance as workdays may be missed. Episodes are unpredictable, and it would be difficult for patients to anticipate them. This directly affects an individual’s ability to work for more extended periods and may impact their career trajectory. Moreover, the type of employment may have a greater impact on an adult with KLS. For example, workers in the private sector are less likely to receive pay for sickness absence.⁸ Therefore, individuals who may work in the private sector may be more significantly burdened financially.

Decreased productivity

In a study conducted on patients with KLS, it was found that overall, 49.5% of patients reported decreased performance in either education or employment. Cognitive deficits were also found to occur, which directly affect productivity and the ability to engage successfully in the workplace.⁷ KLS employees may also struggle with forming long-lasting relationships with colleagues, which can affect their self-esteem and lead to social isolation.

Difficulty holding long-term jobs

For KLS employees, holding long-term jobs can be challenging; episodes may last for days or weeks, making it impossible to work, drastically affecting productivity. Moreover, after an episode, cognitive issues can make it harder to adjust to handling work responsibilities.

Misconceptions about the condition or a lack of understanding from employers may contribute to stigma. Due to the rare nature of KLS, symptoms can often be misunderstood. Employers may think the condition is not as serious as other conditions, which may be more severe.

Employers may also view someone with an inability to hold a long-term job as someone who cannot commit or will not make a good employee.

Need for workplace accommodations

Workplace accommodations must be implemented for employees with KLS. This will both improve productivity and increase the ability to manage a workload for employees, while also allowing employers to continue engaging skilled staff members.⁹ The focus of the organisation should be on maintaining sustainable employment. Workplace accommodations could include flexible or remote work arrangements, reduced working hours (such as a part-time option, if available), and an adjusted workload. 

Impact on social and romantic relationships

Strain on family and friends

KLS can have a significant impact on both social and romantic relationships. Family and friends will have to see their loved one develop personality changes during episodes, especially as symptoms can range from increased food intake and excessive sleep to depressive moods. Certain patients have also been found to engage in behaviours such as singing, rocking and writing on walls. Others report feeling like being in a ‘dream-like’ state. Additionally, some may also experience hallucinations, including both visual and auditory types.² The severity of cases varies greatly and is dependent on the individual. 

For family and friends, depending on how often episodes occur, they may feel emotional distress and concern upon seeing this shift in behaviour and personality. Those experiencing episodes will also need to be cared for, which can be burdensome depending on the frequency of their needs.

Social isolation

Individuals with KLS will struggle to participate in regular, daily activities during an episode. This will include absences from work, school, and other social activities. Individuals with KLS may feel isolated from their friends or peers, as the unpredictability of episodes can mean absences are unplanned. This can affect plans made and may strain relationships with others. Strong social well-being is directly linked to mental health. Social isolation or loneliness has a direct impact on the development of mood disorders in later life.¹⁰

Coping strategies and support system

Psychological counselling and therapy

Psychological counselling and therapy can play a pivotal role in supporting people with KLS. The aftermath of an episode can be scary and lonely. Counselling and therapy can help individuals process their emotions and manage symptoms such as depression and anxiety.¹¹ 

Family education and involvement

Families should be involved immediately, especially when a diagnosis is made. Since KLS is rare, diagnosis may take time and may be frustrating for both patients and their families.² Once a diagnosis is made, it is crucial that families are aware of the condition and its potential effects on their loved one. It can be challenging to see or understand why a loved one is behaving differently from how they usually do. Healthcare professionals should give resources or education to help facilitate an understanding of the condition. As individuals with KLS may require a caregiver, it is essential that family members involved can establish a plan and provide support to their loved one. For teenagers, this can focus on development and long-term goals. For adults, this can focus on what to do during an episode, and advocating for themselves at work or finding more flexible employment.

Summary

In conclusion, KLS is a rare condition that primarily affects teenagers but can affect anyone at any age or life stage. It is characterised by episodes that occur frequently and can last for hours or days at a time. Symptoms that occur during an episode include an increased food intake resulting in weight gain, increased need to sleep and hypersexuality. These episodes significantly impair a person’s daily activities, ability to maintain employment or remain in education and social relationships. This can cause low self-esteem and lead to the development of mood disorders later in life. It is crucial to raise awareness of what KLS is and to ensure schools, organisations, and employers are aware of the condition so they can support affected individuals as much as possible.